I'm the parent of a child living with haemophilia

I'm the parent of a child living with haemophilia

For parents and carers of young children living with haemophilia, one of the hardest challenges is figuring out where to set the boundaries while still allowing your child to explore, and learn. For a teenager the challenge becomes more about  learning to take responsibility for their haemophilia care plans.

A life like any other in almost every way

A life like any other
in almost every way


Discovering that your child has haemophilia can come as a shock.  However, haemophilia can be successfully managed with treatment and  support from  an integrated team that specialises in bleeding disorders at your nearest Comprehensive Care Centre or local Haemophilia Centre.

See opportunities before limitations

I'm a parent of a child living with haemophilia

As your child gets older...

 

The balance between protection and possibility


As a parent of a child with haemophilia, you may be worried initially. Haemophilia can be managed and your child can look forward to a long and fulfilling life. It’s about finding the balance between protection and possibility.

Protection


Avoiding injury and bleeds
  • Have a clear routine regarding your child’s haemophilia treatment.
  • You may wish to install safety gates, childproof locks, radiator covers, and attach corner guards to any sharp edges at home.
  • It is a good idea to maintain good oral hygiene to keep teeth and gums healthy, making it less likely for the gums to bleed or for your child to need dental surgery.
  • It may be ok to use paracetamol for pain relief. Consult with your healthcare team before using other medications

Utilise haelthcare professionals
  • Speak to your Haemophilia Centre about tailoring treatment to your childs individual needs
  • It is a good idea to inform your dentist, family doctor or other members of the healthcare profession that your child has haemophilia.
  • You may wish to give your child a ‘bleeding disorder alert card’ with their diagnosis, blood type, current medication and the telephone numbers of their care team.
  • Do not hesitate to contact doctors and nurses at the haemophilia centre  if you have concerns or questions.

Possibility


Stay positive
  • With proper management, haemophilia should not control every aspect of your child’s life.
  • They should be able to participate in many activities Such as swimming, tennis and cycling. It may depend on the level of severity of their haemophilia.
  • Speak to your haemophilia centre team about the activities that are suitable for your child.
  • Physical activity is particularly important for people with haemophilia to help strengthen muscles and support joints.
 
 
 
Encourage your child
  • You can encourage your child to live a 'normal life' and take part in activities with other children. There are lots of activities your child can do - however it is probably best to avoid contact sports such as rugby!
  • Being part of sporting clubs and having a schedule with regular physical activity will not only do great things for your child’s joints, but help them fit in and feel like any other kid.
  • Don’t forget to enjoy all the wonderful things that having a child entails: play, have fun and explore the world together.

 

NP-9165
Date of preparation: November 2019

I'm the parent of a child living with haemophilia

For parents and carers of young children living with haemophilia, one of the hardest challenges is figuring out where to set the boundaries while still allowing your child to explore, and learn. For a teenager the challenge becomes more about  learning to take responsibility for their haemophilia care plans.

A life like any other in almost every way

A life like any other
in almost every way


Discovering that your child has haemophilia can come as a shock.  However, haemophilia can be successfully managed with treatment and  support from  an integrated team that specialises in bleeding disorders at your nearest Comprehensive Care Centre or local Haemophilia Centre.

See opportunities before limitations

I'm a parent of a child living with haemophilia

As your child gets older...

 

The balance between protection and possibility


As a parent of a child with haemophilia, you may be worried initially. Haemophilia can be managed and your child can look forward to a long and fulfilling life. It’s about finding the balance between protection and possibility.

Protection


Avoiding injury and bleeds
  • Have a clear routine regarding your child’s haemophilia treatment.
  • You may wish to install safety gates, childproof locks, radiator covers, and attach corner guards to any sharp edges at home.
  • It is a good idea to maintain good oral hygiene to keep teeth and gums healthy, making it less likely for the gums to bleed or for your child to need dental surgery.
  • It may be ok to use paracetamol for pain relief. Consult with your healthcare team before using other medications

Utilise haelthcare professionals
  • Speak to your Haemophilia Centre about tailoring treatment to your childs individual needs
  • It is a good idea to inform your dentist, family doctor or other members of the healthcare profession that your child has haemophilia.
  • You may wish to give your child a ‘bleeding disorder alert card’ with their diagnosis, blood type, current medication and the telephone numbers of their care team.
  • Do not hesitate to contact doctors and nurses at the haemophilia centre  if you have concerns or questions.

Possibility


Stay positive
  • With proper management, haemophilia should not control every aspect of your child’s life.
  • They should be able to participate in many activities Such as swimming, tennis and cycling. It may depend on the level of severity of their haemophilia.
  • Speak to your haemophilia centre team about the activities that are suitable for your child.
  • Physical activity is particularly important for people with haemophilia to help strengthen muscles and support joints.
 
 
 
Encourage your child
  • You can encourage your child to live a 'normal life' and take part in activities with other children. There are lots of activities your child can do - however it is probably best to avoid contact sports such as rugby!
  • Being part of sporting clubs and having a schedule with regular physical activity will not only do great things for your child’s joints, but help them fit in and feel like any other kid.
  • Don’t forget to enjoy all the wonderful things that having a child entails: play, have fun and explore the world together.

 

NP-9165
Date of preparation: November 2019